This Is MS Multiple Sclerosis Knowledge & Support Community

Hi everyone,

Over the next few days, I will be conducting interviews with a variety of researchers currently attending the American Academy of Neurology Conference in Vancouver, Canada. To allow you the opportunity to interact with these researchers, we would like to give you the opportunity to have your own questions answered.

In just over 3 hours, we will be conducting online interviews with Dr Rebecca Spain (Oregon Health & Science University (OHSU)) and Dr Tomas Kalincik (Melbourne Brain Centre at RMH). Dr Spain will be discussing her work assessing the neuroprotective ability of the antioxidant, lipoic acid, in people with SPMS. Dr Kalincik will be talking about his research into the use of MS medications in more advanced stages of MS. You can read the abstracts of their work here:

http://www.abstractsonline.com/pp8/#!/4 ... ation/8413
http://www.abstractsonline.com/pp8/#!/4 ... ation/8087

If you have any questions about their research that you would like us to ask, post them below and we will endeavour to ask as many as we can in the allocated time. As we schedule more interviews, they will be posted here as well with links to the abstracts and a request for questions.

Ask away ThisisMS!

Thank you for this opportunity.

In general, for all outcome data in clinical trials I would be interested in knowing the absolute risk reduction outcomes and not just the relative risk reduction outcomes.

I believe this statement from the immunotherapy in advanced MS abstract: "increased utilisation of higher-efficacy therapy and lower ARR during advanced MS are associated with a lower likelihood of accumulating significant disability" needs a great deal of clarification.

What was the likelihood of accumulating significant disability? How was that defined? How many people didn't accumulate significant disability with higher efficacy therapy and lower ARR? How many people didn't accumulate significant disability who weren't on a higher efficacy therapy? Over what time frame? What were the mean and median differences in EDSS between the two groups over time?

Hope the questions makes some sense. Thank you again.

Sharon

Shayk wrote:Thank you for this opportunity.

In general, for all outcome data in clinical trials I would be interested in knowing the absolute risk reduction outcomes and not just the relative risk reduction outcomes.

I believe this statement from the immunotherapy in advanced MS abstract: "increased utilisation of higher-efficacy therapy and lower ARR during advanced MS are associated with a lower likelihood of accumulating significant disability" needs a great deal of clarification.

What was the likelihood of accumulating significant disability? How was that defined? How many people didn't accumulate significant disability with higher efficacy therapy and lower ARR? How many people didn't accumulate significant disability who weren't on a higher efficacy therapy? Over what time frame? What were the mean and median differences in EDSS between the two groups over time?

Hope the questions makes some sense. Thank you again.

Sharon

Thanks Sharon - I will pose these questions to Dr Kalincik when I talk to him later today and I'm sure that he will be happy to answer them. I will also post the link to the interview once we have published it.

Hi Brett,

If it's possible to answer, what are the oxidants they are targeting and what do they presume gave rise to them? What effects do they believe the oxidants have on viability of enzymes, protein folding and the lipids?
What evidence led them to select antioxidants as a potential therapy?

Regards,

Scott1 wrote:Hi Brett,

If it's possible to answer, what are the oxidants they are targeting and what do they presume gave rise to them? What effects do they believe the oxidants have on viability of enzymes, protein folding and the lipids?
What evidence led them to select antioxidants as a potential therapy?

Regards,

Hi Scott1,

Unfortunately, my interview with Dr Spain has just finished and I didn't see this before we started. I will let you know when the video is published and you could pose the same question under the post - I will then forward it to Dr Spain for her response. We did talk a little bit about how they believe lipoic acid may be having the effect seen, which may in part answer your question. Apologies again - the interview with Dr Kalincik will begin in just under 30 minutes, if you have any questions for him.

Thanks,

MStranslate wrote:Dr Spain will be discussing her work assessing the neuroprotective ability of the antioxidant, lipoic acid, in people with SPMS.

I think that any discussion of lipoic acid requires clarification of which form is used. There is plain alpha-lipoic acid which is a 50/50 mix of the R and S enantiomers, R-lipoic acid consisting of the purified R enantiomer and R-lipoates which are stabilized sodium or potassium salts of the carboxylic acid. This is important because the S isomer has been found to have negative physiological effects and the unstabilized acids are known to form polymers making the supplement ineffective.

http://www.thisisms.com/forum/natural-a ... c4347.html

NHE wrote:

MStranslate wrote:Dr Spain will be discussing her work assessing the neuroprotective ability of the antioxidant, lipoic acid, in people with SPMS.

I think that any discussion of lipoic acid requires clarification of which form is used. There is plain alpha-lipoic acid which is a 50/50 mix of the R and S enantiomers, R-lipoic acid consisting of the purified R enantiomer and R-lipoates which are stabilized sodium or potassium salts of the carboxylic acid. This is important because the S isomer has been found to have negative physiological effects and the unstabilized acids are known to form polymers making the supplement ineffective.

http://www.thisisms.com/forum/natural-a ... c4347.html

Excellent point NHE - whilst this wasn't directly covered in the interview, I will follow it up with Dr Spain once we have published it and let you know of her answer.

Shayk wrote:Thank you for this opportunity.

In general, for all outcome data in clinical trials I would be interested in knowing the absolute risk reduction outcomes and not just the relative risk reduction outcomes.

I believe this statement from the immunotherapy in advanced MS abstract: "increased utilisation of higher-efficacy therapy and lower ARR during advanced MS are associated with a lower likelihood of accumulating significant disability" needs a great deal of clarification.

What was the likelihood of accumulating significant disability? How was that defined? How many people didn't accumulate significant disability with higher efficacy therapy and lower ARR? How many people didn't accumulate significant disability who weren't on a higher efficacy therapy? Over what time frame? What were the mean and median differences in EDSS between the two groups over time?

Hope the questions makes some sense. Thank you again.

Sharon

Hi Sharon,

Just to let you know, the interview with Dr Kalincik has been posted today. I have included a separate topic in the forum with information and the links to the videos and transcript. I hope you find it useful and would love to hear any feedback that you might have!

Thanks,

MStranslate wrote:Excellent point NHE - whilst this wasn't directly covered in the interview, I will follow it up with Dr Spain once we have published it and let you know of her answer.

Thank you. I look forward to the answer.

Thank you Brett and thanks also to Dr. Kalincik for addressing my questions.

I've read the transcript and as I understand it this study indicates higher efficacy treatments and fewer relapses (ARR) would potentially give someone with an EDSS = or > 3 a 10% or 1 in 10 chance of a lower likelihood of accumulating significant disability. If I've interpreted incorrectly, don't hesitate to correct me. I don't do statistics at all.

My EDSS is currently less than 3. If it were 3 or more, I don't think I'd do a "higher efficacy" treatment given the risks associated with them.

I've learned that I probably need to put emphasis in my questions.

Thanks again to both of you.

Sharon

Shayk wrote:Thank you Brett and thanks also to Dr. Kalincik for addressing my questions.

I've read the transcript and as I understand it this study indicates higher efficacy treatments and fewer relapses (ARR) would potentially give someone with an EDSS = or > 3 a 10% or 1 in 10 chance of a lower likelihood of accumulating significant disability. If I've interpreted incorrectly, don't hesitate to correct me. I don't do statistics at all.

My EDSS is currently less than 3. If it were 3 or more, I don't think I'd do a "higher efficacy" treatment given the risks associated with them.

I've learned that I probably need to put emphasis in my questions.

Thanks again to both of you.

Sharon

Yeah, I think you have understood that correctly Sharon. In the findings they discussed, they looked at two different timepoints:

- What was the likelihood that people with MS who had reached EDSS 3 would reach EDSS 6 within 5 years. They looked at this for two groups - those who had no treatment or lower efficacy treatment and those on higher efficacy treatments. They found that 90% of the group on the higher efficacy treatment hadn't reached EDSS 6 within those 5 years, whereas it was reduced to 80% in those taking no medications or on the lower efficacy treatments.

- Secondly, they looked between EDSS 6 and EDSS 6.5, which as Dr Kalincik mentioned during the video, is very functionally important for a person with MS, as it is the time that they go from having one walking aid to needing bilateral walking aids (which means they no longer have a free hand to use). The differences between groups were essentially the same here. Within 5 years, only 40% of people taking no medication or lower efficacy medication would not have reached EDSS 6.5. On the other hand, 50% of people taking the higher efficacy medication hadn't reached EDSS 6.5.

The important part of this finding is that there has been a belief that especially at higher EDSS steps, the use of medication isn't worthwhile anymore. This study shows that there is a benefit in some people to continuing to take medication.

As an update, we are conducting an interview with Dr Leigh Charvet in around 9 hours time. Dr Charvet was involved in a number of presentations across the AAN conference, mostly to do with methods to improve cognitive function in people with multiple sclerosis.

The abstracts for these presentations can be found here:

http://www.abstractsonline.com/pp8/#!/4 ... ation/6100
http://www.abstractsonline.com/pp8/#!/4 ... ation/8081
http://www.abstractsonline.com/pp8/#!/4 ... ation/7410
http://www.abstractsonline.com/pp8/#!/4 ... ation/7245
http://www.abstractsonline.com/pp8/#!/4 ... ation/6116
http://www.abstractsonline.com/pp8/#!/4 ... ation/7724

If you have any questions for Dr Charvert, please submit them below and I'll endeavour to ask them during the interview.

Thanks,

Could you ask if medication or supplements made a difference to outcomes and a decline in cognitive capability was that decline correlated with a particular physical decline? Which treatments made no difference? Did a decline correlate with any specific blood test outcomes?

Regards,

Scott1 wrote:Could you ask if medication or supplements made a difference to outcomes and a decline in cognitive capability was that decline correlated with a particular physical decline? Which treatments made no difference? Did a decline correlate with any specific blood test outcomes?

Regards,

Thanks Scott1 - I'll definitely pose these questions to Dr Charvert this evening when I talk to her.